“Ethnic Pain”: The Struggle for Equitable Treatment in the Danish Healthcare System

The ´´Good´´ Immigrant

A middle-aged man presents with prostate cancer. At diagnosis, the doctor requires the services of an interpreter. As there are no professionally trained interpreters available, the doctor relies on the man´s eight-year old daughter to transmit the prognosis. Additionally, the doctor has the daughter relay the possible sexual side-effects of the condition.

Much good can be said about the Danish healthcare system. It is largely funded by taxes and allows equal access to healthcare regardless of economic status. Similarly, the decentralized organization of the healthcare system relies upon municipal control, which promotes efficiency and allows districts the flexibility to respond to local health concerns. For such comprehensive coverage, Denmark also has one of the lowest cost indexes in the world, with the government spending only 1,200 DKK per person, per year on hospital admittance and primary healthcare treatment. By and large, the healthcare system enjoys a respectable rate of satisfaction from Danish citizens.

However, the benefits of this system are not enjoyed equally by all segments of Danish society. According to a series of studies from Copenhagen University dating back to 1998, the immigrant population in Denmark is at greater risk from disease than ethnic Danes. This differential health outcome extends to the prevalence of disease, the time of detection, the course of treatment, and ultimately, the prognosis. These findings have held true for diseases ranging from cancer to Type II Diabetes. The extent to which these outcomes differ between foreigners and ethnic Danes suggests a bias within the healthcare system.

Maria Kristiansen, a PhD candidate in Copenhagen University’s Department of Public Health, has spent years researching inequity present in the Danish healthcare system. In her current research on cancer, Kristiansen has collected dozens of stories in which ethnic minorities were given a shockingly substandard quality of care. She relayed stories in which anyone from children to cleaning ladies was recruited to inform their patients about their cancer. When questioned about why patients don’t come forward with these stories, Kristiansen relayed her own frustrations: “I’ve been trying to get patients to stand up for a long time. But everyone wants to be the ‘good’ immigrant. Nobody wants to be the one that causes problems for everyone else.”

With this bias enduring over the course of years of studies, the pertinent question to ask is how this bias manifests itself on a day to day basis for immigrant patients. Kristiansen postulated three possible causal explanations for the bias: language barriers, a lack of cultural competence amongst hospital staff, and discrimination. Recently, these difficulties have been exacerbated by the entrance of the politics of integration into the healthcare system. A question of substandard treatment is now not only a healthcare issue, but a question of whether or not culpability lies with an unassimilated patient. As they stand, healthcare standards remain unchallenged by a silent minority. With these standards now subject to the whims of political will, the gap between the healthcare outcomes of ethnic Danes and these ‘good immigrants’ threatens to become even wider.

Lost in Translation

A woman lacking fluency in Danish has a consultation with her doctor. She has cancer and needs to know the possible courses of treatment. A doctor tries as best as he can to explain the different treatments and side effects in elementary Danish. She doesn’t understand. In the end the doctor uses hand motions to mime her hair falling out as a result of the chemotherapy. The woman opposes the treatment option involving hair loss and the doctor notes her rejection of chemotherapy.

All patients in Denmark are entitled to several basic rights outlined by the Ministry of Health. Everyone has a right to treatment, information about treatment options and their own health, and, except in the case of emergency, patients have the right to self-determination. As of 2008, 378,665 people residing in Denmark were immigrants. Even generously assuming a basic level of competency in Danish amongst all immigrant patients does not preclude the possibility of them having difficulty understanding advanced medical treatments. Migrant patients are also burdened with having to cogently articulate their medical symptoms in a foreign language. Such barriers between doctor and patient make it difficult for doctors to fulfil their obligations to maintain the patient’s right of informed consent and ensure a high quality of medical care.

Limited communication also has a less obvious, but similarly destructive side-effect: a lack of “small-talk.” In a University of Copenhagen study from 2008, researchers found that Danish doctors did not derive as much satisfaction from treating foreign patients as they did treating ethnically Danish patients. The study suggested that immigrant patients tended to overuse or even misuse the emergency room, causing frustration amongst hospital staff. An earlier survey on emergency room overuse amongst immigrants found that foreigners had not established a rapport with their general practitioner, and felt more comfortable coming to the emergency room for standard medical treatment. This can prove problematic for several reasons. Most obviously, an emergency room physician lacks the familiarity with the patient’s previous medical history, which would normally inform a course of treatment. Secondly, emergency rooms are not properly equipped to deal with preventative, long-term, or continuing treatment. Once a patient has been properly stabilized or has received treatment, they are no longer the concern of the emergency room. Lastly, the frustrating misuse of emergency room care only serves to reinforce the uncomfortable dynamic between Danish physicians and immigrant patients. This lack of rapport not only burdens emergency rooms, but also results in inadequate care amongst immigrant patients, creating a cyclical pattern of neglect and subsequent hospital misuse.

Imran Rashid, a current general practitioner and lecturer on medical cultural competency, argued that a lack of a doctor-patient relationship in the immigrant community has severe ramifications for the healthcare system. “The whole system is built on confidence,” Rashid claims, “if doctors don’t have faith in their patients, and patients can’t confide in their doctors, the whole system falls apart.” Situations in which patients feel misunderstood breeds a sense of insecurity in the quality of medical treatment received. According to Maria Kristiansen, confidence levels have occasionally dipped so low amongst immigrants that some have opted to return to their country of origin for treatment instead of trust in the Danish healthcare system.

Cost-Benefit Analysis

One commonly mentioned solution to the language barrier is to allocate more funds for interpreter services, thereby alleviating the burden from the healthcare professional. Professional interpretation can help attenuate the misunderstandings between patients and their doctors, and consequently, ensure a higher standard of care.

With so many problems associated with limited communication, hiring more interpreters would seem to be a pragmatic solution. However, hiring more interpreters would not be logistically simple nor is the use of interpreters universally accepted. Decision making in Danish hospitals is typically decentralized. Each hospital department has its own administration which is in charge of the department’s budget, resources and priorities. Oftentimes it is up to the department secretaries to arrange contacts with an interpreter for non-Danish speaking patients. However, in many situations interpreters are not provided in the dialogue between patient and healthcare professionals. This can occur for one of several reasons. First, health care professionals work under significant time pressure, and it is not conducive to hospital efficiency to have to wait for interpreters to arrive to treat patients that walk into the emergency room. Secondly, there is a concern as to the quality of interpretation. Dr. Mette Sørenson, a general practitioner in Copenhagen, has felt that a number of interpreters she has relied upon have not faithfully relayed her medical instructions. “Of course I have no way of knowing,” says Sørenson “but I question whether or not they´re relaying information accurately when I give long instructions and they only say about two words.” Waiting for interpreters is even less likely to occur when healthcare professionals doubt their efficacy. Lastly, in small migrant communities, immigrants actually prefer not having official translators as there would be a high probability that they personally know the translator, which risks a serious breach in patient confidentiality.

Some detractors actively oppose the wide-spread use of interpreters based on principle alone. As the debate on integration rages in the media, that debate has found its way into the public hospitals. Imran Rashid frequently is asked to give lectures on cultural competence. “Some of the things people say would shock you. I mean these are highly educated people,” Rashid said, “The things they said would be fine if they just stayed in their living rooms, but they are saying these things in departmental meetings.” Rashid touched upon a common frustration in which some healthcare professionals find it unacceptable that immigrants remain here for years and yet are still unable to speak Danish. Critics of the widespread use of interpreters also claim that it also serves as a crutch for immigrants and doesn’t provide them incentive for them to learn the language. Although there may be some merit to this argument, Rashid argues that introducing the politics of integration into the hospital directly contradicts the humanitarian ethic of medical philosophy and, more importantly, puts the health of patients at risk.

Recently, some politicians have come to agree with the position that a lack of Danish linguistic competence is the responsibility of the patient and not the government. In 2004, the Danish People’s Party introduced a bill stipulating that: “The county councils should charge a fee for interpreter service from people who have lived here in the country for 7 years or more and who need an interpreter in connection with the treatment of the hospitals.”

Estimates of the cost of having a private interpreter drive out to meet a patient and interpret for an hour run up to an exorbitant 372 DKK, an amount that would seem antithetical to the idea of free healthcare. When asked about the viability of such a plan, Dr. Sørensen replied that “Not a single one of my patients would ever pay that fee. Instead they would bring their children to translate or not have an interpreter at all. It’s about collective punishment, not saving resources.” Dr. Sørensen was also quick to point out that when doctors and patients lack adequate communication, it requires more time on the part of the caregiver, and frequently more tests, which increases the burden on the State. The economic burden on the State would be far greater, Sørensen argues, without adequate interpretation, than with it. With this new law going into effect, she believes things will be worse off for both the patient and the caregiver.

Asma Bashir, a current medical student with 8 years of nursing experience, has also joined the chorus of voices against the Danish People’s Party bill. As the founder of Health Mecca, Bashir not only has experience training doctors in cultural competency, but also in teaching minority patients how to properly utilize the healthcare system. Although Bashir is critical of newspaper articles that allege racism in Danish hospitals when she says she has never witnessed any, she also expressed wariness about the recent politicization of the Danish healthcare system. She points out that many ethnic minority patients are economically disadvantaged and do not have the same job opportunities as many Danes. If a patient has been in Denmark for seven years and has yet to learn Danish, it is doubtful they have the financial means to secure an expensive interpreter for a standard hospital visit. Bashir contends that politicians have to realize that it is their responsibility to see that hospitals secure equal treatment for every patient. In her opinion, skilled interpretation is less about special accommodation for minorities and more about ensuring equality of treatment and guaranteeing a patient’s rights. According to a national census, 6.1% of residents within Denmark are immigrants from non-Western countries. Within the next few years the number of ethnic minority patients will rise and as Asma Bashir says, “The hospital administrations have to face the problems, language barriers will continue to exist.”

The Ignorant Discourse

In a children’s department in one of the main hospitals in Copenhagen, a nurse has her first day at work. On a departmental bulletin board hangs a picture of two parents and a child. The nurse comments on the picture: “I hope we don’t have a lot of those patients, they cause too much trouble.” The father in the family picture is originally from Somalia. The head nurse hears what she says and the new nurse is immediately transferred to another department.

“No words are innocent anymore,” says Thøger Seidenfaden, chief editor of the Danish daily newspaper Politiken, referring to the recent rightward shift in public rhetoric. The way in which the Danish People’s Party, an extreme right wing party, has framed the political conversation on immigrants has resulted in a polarized politic since 2001. In public discourse, ethnic minority groups in Denmark are openly described as a threat to Danish democracy and their ability to integrate is regularly called into question. Although it is difficult to quantify the impact of rhetoric on public perspectives, the political validation of these extreme viewpoints clearly lends credence to anyone sharing in this ideology. Imran Rashid describes the media as giving “no neutral pictures. They are very unilateral in their view. The media sees foreigners as a threat and this affects people who do not meet foreigners in their daily life.” Rashid contends that people who do not interact with foreigners regularly are more likely to have their views colored by the media, and consequently, hold a more prejudiced view against foreigners. Having no spokesman or voice in the media, the position of immigrants is represented only by their detractors. In 2004, the Institute of Public Health at Copenhagen University surveyed health professionals in relation to their knowledge and attitudes towards immigrant patients. From this research, it was discovered that 87% of 517 doctors, nurses, and nurse assistants reported that they obtained their knowledge about ethnic minorities through the media whereas only 77% also listed patient contact. The research revealed the high percentage of professionals who rely on a recognizably biased media to extract information on a portion of their own patient population.

Well-Meaning Prejudice

A doctor has to have a conversation with a mother with a Somali background because she has lost her child. The doctor calls the hospital’s Imam, Naveed Baig, to ask him if there is anything cultural she should be aware of when relating the news to the Somalian women. Naveed tells her that she should just treat the mother as anyone else who has lost a child.

With health professionals getting their knowledge about ethnic patients from an uninformed media, even well-meaning professionals can fall victim to the predilection of stereotyping. Based on Maria Kristiansen’s research observations, the stereotyping relies mostly on the patient’s culture, dress, look, or skin color. In their different lines of work, both Imran Rashid and Maria Kristiansen have both noticed that many health care professionals have a tendency to view ethnic minority patients belonging to a group as opposed to being individuals. For example, a well-intentioned male physician who is scheduled to treat a woman with a hijab may ask a female colleague to conduct a routine examination, without consulting the patient. Although the doctor may have felt he was following a culturally sensitive protocol, the woman may in fact have felt discriminated against.

Dr. Imran Rashid is hesitant to place the label of discrimination, “I don’t think there’s any obvious discrimination taking place. I think some doctors are well-meaning but misguided when it comes to treating ethnic patients.” Both Rashid and Kristiansen have suggested that ethnic minorities shouldn’t be seen as members of a homogenous group, but as individuals in a very heterogenic group. They both stress the importance of engaging with the patient before making any assumptions about the patient’s requirements. In response to stereotyping in hospitals, Imran Rashid wrote an educational booklet for healthcare professionals about intercultural understanding in practice. In his booklet, Rashid describes how “invisible discrimination” is taking place by healthcare professionals who are altering their approach to patients based on a predetermined expectation. The way the health care professionals categorize patients can lead to a discriminatory health outcome, often without the professional ever realizing they’ve used non-medical knowledge to inform their treatments. There is a tenuous balance between a lack of sensitivity and the dangers of oversensitivity that Danish physicians must find. Although there may be no discriminatory intent taking place on the part of well-meaning doctors, patients may still feel marginalized. To Rashid, the solution to these problems lies in proactive cultural competency training for healthcare professionals. Rashid believes that this issue can only be resolved once cultural competency is viewed as just as much a medical skill as taking someone’s blood pressure.

Worse-case scenario

A child urgently needs a liver transplant. His father is described as patriarchal, wanting to control the child’s treatment. The mother doesn’t interfere in any discussions, she only watches over the boy. Another person comes to the same department and also needs a new liver. He is only there for a short time before a new liver is found that matches his blood-type. The father of the boy makes allegations of mistreatment and racism against the hospital staff.

Vibeke Manniche is a doctor and an active debater on gender equality and ethnicity issues in the Danish healthcare system. On June 15th, she was quoted by a Danish newspaper as saying, “If I came as a patient to a female veiled [hijab-wearing] doctor and had to have a gynecological examination with full view of my sexuality, I would feel much more intimidated by her than by a male doctor.” Supporters of Manniche are quick to dismiss stories of alleged racism, arguing that patients simply don’t understand the Danish healthcare system and instances of prejudice are actually instances of misunderstood protocol. Vibeke Manniche is credited by some as causing a schism between doctors and patients along ethnic lines. “Comments like these cause ethnic patients to lose faith in Danish doctors, and in turn for Danish patients to lose faith in ethnic doctors,” says Dr. Imran Rashid. Both Dr. Rashid and Dr. Mette Sørensen have mentioned that migrant patients are often worried that they won’t be taken seriously by Danish physicians, causing a tendency amongst migrants to exaggerate their conditions. Amongst Danish physicians, this is colloquially known as “ethnic pain.” To Dr. Sørensen, all pain, even if it is not physically manifested, is real pain. To her, the perpetual cycle of exaggeration and correspondingly, lack of serious concern, plays a pivotal role in the late detection of disease in minority populations: “If a patient comes in 20 times for stomach pain, on the 21st time I would probably assume it was something simple when it could in fact be cancer.”

Although all people interviewed firmly believe in the humanitarian ethic present in hospital staffs, they all express concern about the way the perceptions of ethnic minorities in the hospital system are developing. “When Vibeke Manniche talks as a doctor in the public debate, people believe in her because of her position. It is very dangerous with people like her, because we do not know where it will end.” says Imran Rashid. The availability of interpreters and intercultural seminars are commonly cited as necessary to ensure fewer misunderstandings and increase patient confidence in the healthcare system. However, if the rhetoric continues to become more negative and people continue to lose confidence, there is a serious danger of a bifurcated healthcare system. That is to say, Danish patients may prefer to be treated by Danish doctors and minority patients may prefer to be treated by only minority doctors. The social implications of having a segregated system in the public sphere may prove to be more damaging in the long term than short term inequities.

Hospitals as a Social Microcosm

As in the national debate on immigration, allegations of discrimination threaten to polarize the healthcare community. In wake of this national debate, Anne Rygaard Bennedsen of the Ministry of Public Health office mentioned that many hospitals are doing a good job avoiding discrimination and that health care professionals have a vested interest in improving their work with minority patients. “They are unintentional acts. They try to do a good job, but it doesn’t always turn out that way. But they have a great interest in cultural learning,” she says. Both Bashir and Rashid agree with this viewpoint, stressing that any discrimination taking place is not the intent of any healthcare professional. Yet, regardless of intent, the consequence of cultural misunderstanding has patients alleging discrimination. As Maria Kristiansen argued, “If the patient claims to have felt discriminated against, what more evidence do I need that discrimination exists?”

However, the debate on active discrimination in the Danish healthcare system threatens to take the focus away from the central issue; the fact that differential health outcomes still exist for minority patients. More importantly still, solutions for these issues are almost universally advocated for without serious change taking place. Allocating the appropriate resources to have properly trained interpreters on hand would not only take the burden off of healthcare professionals, but also provide more equitable treatment for minority patients. Pragmatically speaking, the high cost of quality interpretation could be easily offset by the time and costly examinations saved by having a more precise idea of a patient’s condition. A lack of political will to implement simple changes that would help migrant communities suggests a far more troubling political reality.

Although the current political climate is for restricting accommodations for minority populations, Rashid and Bashir are confident that a growing immigrant population may change the national climate. As the migrant population grows, more and more patients and colleagues of Danish physicians are likely to belong to minority populations. For now however, hospitals hold a unique segment in Danish society. Hospitals are the one location in Denmark where both minorities and ethnic Danes are forced to interact on a regular basis. It is an arena in which the humanitarian ethic is dominant, and the welfare of both populations is inextricably linked. The question of equitable Danish healthcare is directly connected to the greater question of Danish equality. As Imran Rashid rhetorically asked, “If we can’t get it to work here, where will it work?”